GOOD NEWS!!

GOD IS GOOD! Joshua's medicine in on the way!!!!! We've had our phone counseling from the pharmaceutical company and they have all Joshua's info so they are Fed-Ex'ing (can I verb that?) the package overnight. We'll have it tomorrow for him to start his meds.


We are hoping these meds will improve his ability to exercise, improve shortness of breath, and stop this disease from progressing.


He starts on half a dose, then will go to a full dose the next month.


They don't expect to see results until he's been on the meds 1-2 months.


He will have monthly blood tests to check liver function. These have to be turned into the drug company before they will send the next months dose. I'm thankful they do reminder calls 2 weeks before he is to run out of pills to help us remember to get these done and get the next month's meds on the way.


Thank you for your prayers. So far our insurance is covering this expensive medication (average $3000/month)!! Praise God!


Please feel free to leave a comment of encouragement for Joshua if you'd like. You can also email me if you'd like. My email is under the About Me section in my complete profile.

Proverbs 3: 5-6 "Trust in the Lord with all your heart and lean not on your own understanding."

We're Home

We're home and Joshua is fine. We're all exhausted but hopeful. Joshua was able to take off his bandage last night which made him happy. He was tired of that compression bandage on his groin.

We're in a waiting stage right now for the medicines to be approved and started. It's a long paper trail since these are not drugs you can just go get at Wal-greens. It takes a lot of paperwork from the hospital showing necessity, which they have plenty of. Then we'll get them directly from the manufacturer or center that sends them out.

We visit our pulmonologist here in Jax next week and then the cardiologist here (the fantastic doctor here that found the PDA when everyone else missed it) in 2 weeks. Hopefully we'll start the meds in two weeks. We will travel back to Gainesville in a month.

More to come on Joshua but that's it for now. The brains are a little fried with info overload and I want to get information out to you but please understand we're trying to figure it all out as well and I want to be able to explain it so you can understand it too.

Please keep Joshua in your prayers. Thank you so much.

Update to the Link

Some of you said there were problems with the link below. It's been updated. Thank you.

Diagnosis - from John

Good Evening,

Long 2 days just wanted to get this out so you all can know where we are with Josh. All I can say is WOW info over load, so easiest way to let you all in, is check out the two web sites below and we will be back in Jax on Wednesday. He's been diagnosed with Eisenmenger's Syndrome.

http://www.cachnet.org/managing_sec15.html

Treatment for people with Eisenmenger's syndrome is aimed at controlling symptoms and preventing complications. Medication is the primary treatment option. Surgery to repair the defect once Eisenmenger's syndrome has developed is not possible. Heart and lung transplantation or lung transplant are options for some people with Eisenmenger's syndrome.

http://www.tracleer.com/ This is the first drug we are going to try. May not work but have to try before moving on to next option.

JOHN!

Joshua Update Part 2

We're finished with the hospital. I had very poor cell service and was not able to take calls, I'm sorry.

Joshua is resting very comfortably here in the hotel. He's doing great and in good spirits. He wants me to thank all of you for you prayers and calls and texts and concern for him. He is just so awesome to be around and has such a great spirit and heart (even with the defect!!) He is a good patient too, although he was getting quite antsy having to lay FLAT for 6 hours. UGH!!!

A special big thank you to Dan Abel for coming down and sitting with Joshua for a long time, enduring the special effects of anesthesia. Thank you Dan - you're such a blessing to us and you don't realize how much it meant to Joshua for you to be there with him and us. We appreciate you!!

There is a LOT of information to process right now. Please allow us some time to organize the many pages of notes I've taken today and I will post more once I get it all together in a coherent form.

I'll try to get it posted soon. Thanks for your patience!!

Joshua Update...

Today was a good day although exhausting. We arrived safely in Gainesville and went straight into our appointments with Dr. P and the cardiology team for EKG, ECHO, and X-RAY.

Here is what we know so far...

• He will be the first case in the morning. This is good news. We are to arrive at the hospital at 7AM. Our hotel is only a few blocks from the hospital.
• The procedure will take between 3-4 hours. It may take a little longer since he is allergic to the blood thinner they normally use. This may slow down the passing of the catheter through the arteries.
• Recovery will be about 3-6 hours. We will get to be with him during this time.
• They will NOT repair the PDA at this time. He feels the pressures are too high in the pulmonary arteries and would cause heart failure. Joshua may always have this PDA since his heart needs it right now as a pressure release valve. They will not consider closing it unless his pressures can come down by 50%.
• They will go through the groin for the cath unless there is scar tissue from previous procedures as an infant. If there is scar tissue, they will go through the neck.
• They will do testing of the pressures in the chambers of the heart. Then they will administer different gasses to see how the lungs react to it. This will help us determine which medicines are best for him in the long run. We may not be able to start these medicines immediately because they require insurance approval as they are expensive drugs. If they are able to start these immediately, we will stay in the hospital a couple days.
• The doctor feels this PDA must have popped back open sometime possibly while Joshua was still in the NICU. It's just not something that anyone would know about since it takes a while for the symptoms to appear.
• The heart cath is necessary whether they fix the PDA or not. It will definitively diagnose how bad the pulmonary hypertension is and how bad the arteries and ventricles of the heart are at this time.
• We WILL stay the night at the hotel either way tomorrow night. They do not want us to travel more than an hour away the first 24 hours after the surgery to make sure there are no problems with the artery they use.

We are also going to be meeting Dr. A tomorrow who is a pulmonary hypertension specialist. He will be able to give us more information as far as what to expect long term for Joshua and what his abilities are going to be.

Some of you may not realize this but Joshua gets out of breath just by taking the trash to the curb if the containers are heavy. A leisurely walk more than 100 feet makes him out of breath. These are the things we are hoping to improve upon but will never be able to fix completely.

If you have any questions, please feel free to leave a comment and I'll try to answer them on here.

Please pray for the doctors to see EXACTLY what they need to and to be able to find the perfect cocktail for Joshua to take to help his heart and lungs relax. Please also pray for me to relax and not stress out and take it all out on John!

Hug yourselves from us!

In Gainesville

We are at the hospital now for our clinic appointments. I'm actually IN the room now waiting for the doctor using their computer!! WOW!!!

Joshua is doing fine and we're all highly anticipating meeting the doctors and creating a plan!!!

Love you all and thank you so much for your prayers, calls, and help with the kids!

I'll try to update more when I can.